Sunday, July 30, 2017

Herding cats and the promise of a unicorn

I am sure there is a deliberate rhythm to this place, a plan
to walk you from Point A to Point B with specific checkpoints along the
way.I am also sure that our experience
is nothing new to the clinicians here.But as someone who is normally sitting on the other side of the table it
has been an eye-opening process.I know
I try to be very deliberate in the way that I lead families through education
and goal setting, or through coming to terms with facts that are unexpected (or
worse) – and I am also very certain that I am not this good at it.

But I am getting ahead of myself.So I guess we start at the beginning, right?

With nearly a year to anticipate this trip we could have
allowed ourselves to pin a whole lot of hopes and expectations on this
experience.I’m glad we didn’t do that.Mostly I would say that it was (for me at
least) an exercise in patience, waiting for answers that I was certain we would
find, but not knowing what they would be, how they would impact Becca or our
family, if we would be able to implement them in a way that would bring about meaningful
change or improvements…I didn’t really
even know the questions, let alone the answers.So the waiting was hard.

As far as STAR goes I can obviously only speak to our
experience.I am certain other families
may go through a different process, depending on the age of their child and
what their goals might be.(And it’s
important to note that STAR is not just for kids – I have seen plenty of older
adolescents and adults here as well.SPD
doesn’t come with an expiration date.)But as for me and my crew, we hit the ground running with a two hour
evaluation, both with what appeared to be some variety of formal testing followed by observation of Becca in the
gym.The entire assessment was
videotaped for Mim, our OT, to review later (and it is also available for them
to use for other educational purposes, too).That evening we spent two more hours filling out several (six? seven? eight,
maybe?) parent reports, list after list after list of behaviors or observations
that we needed to fit onto various scales.

Honestly I love my kid to pieces but I don’t know anyone well
enough to answer 800 questions about them.(800 is a guess…. but I’ll bet it’s a really good one.)

So let’s just say the parent reports were mentally exhausting.Which was too bad, because day two was a
three hour day:an hour going over the
test results and getting an introductory crash course in SPD; another hour
taking those results and framing out our goals for Becca (not for the next four
weeks but for the next several months); and, finally, the first hour of
therapy.

And oh brother, this therapy.

What do we do?We
play.That’s about it, just… play.But you would be shocked at how difficult it
is to play with your three year old when you have learned that you’ve been
doing it all wrong.(My words, not
theirs.)

This is where things get sticky.I have wrestled with how far or deep to delve
into all of this.I’m fascinated,
professionally, about what we are learning.I’m struggling mightly as a parent to absorb every last ounce of
information.And there is so much – so much
that is not what I was expecting at all, more basic even than understanding how
Becca’s body processes all of the sensory input she is getting.

But I need to back up.Before Mim introduced us to a new style of intervention, she talked to
us about what makes Bex tick.And
because I am not an expert, and because no one is reading this to get bored by
tedious details, I’ll sum up:Becca is
under-responsive to the world around her – but providing the right kind and
amount of input to “wake her up” is tricky, because she can bounce from zero to
100 very quickly… only to crash back down to zero again.

The visual they use is a helpful one: Picture a bell
curve.The center third, at the peak of
the curve, is where most people – at least those who don’t have significant issues
with SPD – function throughout the day.It’s the sweet spot, the “just right” spot where you are alert and
engaged but not wired.We can work, run
errands, do the laundry, play with the kids, read a book, whatever.We feel like ourselves in this space.

Becca lives at the bottom left end of that bell curve.Her arousal level is low.This doesn’t mean she isn’t awake, it just
means that her baseline is low energy – try to remember the photo of her lying
on our threshold, milk propped up right in front of her so she didn’t even have
to hold it.On top of this, most people
with SPD don’t have a nice, wide sweet spot on their bell curve.Instead, they have a narrow band in which to
function at their “just right” level.So
not only do we need to know how best to get Bex more aroused but we also need
to help her find, and maintain, that zone that allows her to function at her
best.

If the phrase “herding cats” comes to mind you are not alone
because that is often what this feels like in practice.

So that is the first thing: we need to metaphorically wake
her up, then help her find that sweet spot so she can interact with the world
in the best way possible.But we can’t
overshoot it, either, because then she just spins out of control until she
crashes back down to her baseline.

From a sensory perspective, this seems to me to be the
starting point.Once we help her learn
how to regulate this then we can work up through higher levels of sensory demand,
some which will not emerge developmentally for several years.

But in fact we are actually starting at a place that comes before this, at a developmental stage
that typically emerges before all of the other familiar milestones start to arise.Our job right now is to help Becca engage
with her world and, most importantly, with us.This is our portal, so to speak, to help her learn how to regulate her
sensory needs which, in turn, will undergird her efforts in other areas.

Engagement is a big but simple idea.I think it is kind of magical – both in the
way that a child’s first visit with Mickey Mouse is magical and in the way that
unicorns are magical: full of wonderment but oh, so elusive.